Tag Archives: Wendy Brabon

It’s only recently that I fully came to understand how my near death experience so many years ago changed the course of my life.

It was the middle of January and a typical winter day in Rochester, New York when the days are short and bitterly cold. Snow blanketed the ground as I made my daily trip to the hospital to spend time with my son who was two weeks old and cradled in the intensive care unit. I felt as though my life was frozen in time, nothing else mattered.

My life went from total joy in anticipation of our long awaited arrival to a place of confusion and fear. The nurses who cared for my son Kyle repeatedly remarked on how thin I was for just having a baby. I was totally unaware of my body. I hadn’t been feeling well for a few days, but I didn’t give it much attention. My only focus was on Kyle. On this day I gowned up, scrubbed my hands and went through the glass doors to the intensive care unit where a nurse carefully handed me my son who slept in an incubator. I sat in a rocking chair and found being here with Kyle was the only place I felt at peace.

Thirty minutes into holding my son, I felt a drastic change in my body; I knew something was seriously wrong as I hand our son to my husband.

My son Kyle and I

By the time I was rushed into the emergency room, I was in and out of consciousness and I didn’t understand what was happening to me. The room was small and cramped with doctors and nurses rushing in and out of the room. My Doctor yelled orders to the staff and it felt chaotic. With a nurse on either side of me, I could see the frustration in their face as they struggle to attach an IV to different parts of my arms because my veins had collapsed. I had lost too much blood. My doctor moved swiftly to stop the bleeding because he knew my heart would not be able to maintain the blood pressure. I was failing fast.

That’s when I felt myself gently float above my body. I felt warmth, peace and love surrounding me with a beautiful soft white light that led toward a tunnel. As I looked down at my body lying on the hospital bed, I was aware that I was dying but it didn’t feel like a tragedy even though I was just 24 years old.

I pondered in this peaceful place between two worlds and I had no sense of how much time had elapsed. It’s difficult to put into words how I felt, but I will try. In this place I felt an immense amount of love, acceptance and warmth. I could see clearly that the many negative thoughts that had previously occupied my mind were in no way justified. Why had I believed I was such a terrible person, why had I strived for so much perfection, why had I tried so hard to be someone other than myself?

The Flip Flop

I believe it was during that mysterious time between two worlds that I made the choice to begin again. When I awoke my body felt cold. I was confused and in pain. I was missing the warmth and love I had felt in what seemed just moments ago. I was thinking about my son Kyle, and how we were planning to bring him home the following week. I felt the urgent need to see him right away.

It was 24 hours before they removed the tubes from my body, and a total of 48 hours later when Kyle passed away in my arms. He was barely three weeks old.

Losing my son is all that occupied my mind for a long time. I felt unsafe in the world and desperately wanted and needed something, I couldn’t comprehend that I had the most amazing experience of my life and now I felt empty. It would be months before I felt any of the love and joy that had surrounded me when he first came in this world.

At the same time, I was acutely aware that I no longer wanted the same things out of life. I had worked diligently towards work advancement, material things and always looking my best. None of these things mattered. I felt lost.

And now…

When I look back at the moment where I left my body and felt the warmth and love through every fiber of my being, I realize that the soft powerful white light was me – my soul. Each and every one of us has this light inside of us.

As I contemplate my donation just three years ago today– it was a time of loss, a time of growth and a time of giving. It was also a compilation of how I had lived my life up until that point. So often, when we are going through difficult times it’s hard to imagine anything beyond the hurt and pain.

I intuitively knew I needed to get the focus off myself. Donating my kidney certainly helped me accomplish that!

A new day

I believe so much of this is around timing, while every aspect of my life had been interrupted– I found by giving at this magnitude, I was able to open up and learn a new way of being!

Today, I have a greater appreciation for life and for others. I no longer feel that I am in this world trudging along and worrying about what is next. Instead I feel an intense amount of gratitude for nature and people along with a deep sense of knowing that everything is as it should be.

I feel connected.

On August 16, 2012 I donated my kidney on behalf of my brother Tim at UPMC in Pittsburgh. Although I was not a match, we were part of this amazing circle where eight of us exchanged kidneys. Therefore my kidney went to NYC, Tim’s kidney came from Philadelphia, etc. I loved being part of this bigger circle and often wonder how everyone in doing today.

There are so many families who have loved one’s that are in need of support– whether it’s organ donation, loss of health, or situations that impact our lives. I believe we are here to support one another and to make our lives bigger than our own.

I am forever grateful for all the support and encouragement I received from family and friends.

I recently noticed I was struggling. I began striving for things such as; loosing a few extra pounds, wishing I had this or that. To me this is dangerous, the message is clear that I am moving away from my core to external wants. Mind you, it’s ok to want and desire more for yourself. However, when your experiences are based on external ideas of you not being enough, something is missing. For me, it’s a reminder that I have stepped away from my core. I know for sure that we have the ability to be happy in this world with gratitude.

Two years ago I learned this lesson well.

Everything in my life fell apart, finances, relationship, and business and I was facing major surgery to donate my kidney on behalf of my brother. At the time, I simplified it, thinking I could donate my organ and heal over the next few weeks and then get back to picking up the pieces of my life. However, things turned out very differently…..

I started blogging prior to the surgery and opened myself up. In the past I lived my life only showing the pieces of myself that I chose to share. Although, I was warm and friendly most people knew little about me. All of that changed with my blogs. I wrote about my deepest fears, thoughts and insecurities and my world opened. People could relate to this person and through these experiences I learned how connected we all are.

After my surgery life slowed down (in part because of the pain), I became very present and realized the impact my surgery had on my brother and the chain I was part of. The gratitude I felt was staggering. I felt like I had been reborn and woke up in color. Nothing seemed too hard, everything seemed as it should. It was the first time in my life that my soul was at peace with itself. It took me a year to heal completely from the surgery, it was time well spent loving both myself and everything around me.

I realized even though I practiced gratitude throughout my life, this was deeper. I felt gratitude in every cell of my body.

Here are five ways to create a practice of gratitude

1). Before you go to bed; take a moment and consider what you are grateful for? Then feel it in your body, this is very important. Recall the day your child was born, or the day you learned that “fill in the blank”. Reconnect with the emotion from that moment, feel that sense of excitement and appreciation in your body.

2). Keep a daily gratitude journal. I keep a calendar and write down every evening what I am grateful for; at times it’s my breath, my kids, the sky. Other times it’s something amazing that happened in my day.

3). Wake up each morning with your first thought of gratitude. Instead of thinking about everything you need to do, take a moment relax and feel what you are grateful for. You cannot be in an ego state when you are in gratitude.

4). Throughout your day stop and feel gratitude, notice what is positive in others and give someone a compliment. It gives us energy to see the good in others.

5). When you find yourself in a negative situation, ask yourself what can I learn from this experience and what can or will I be grateful for?

“The more we care for the happiness of others, the greater is our own sense of well-being. Dali Lama

So why do we compare? Does it give us an opportunity to justify our own actions? Or perhaps make us feel worthier than our counterpart or even more so– to separate ourselves from others. We all judge on some level and some more than others. Families can often be the worse. We are often programmed to compete, to compare, and criticize and it can cycle through to the next generation.

How can we stop this behaviour? First, we need to be aware of our thoughts and what is going on within ourselves. We often judge others simply because of our own personal experiences. Haven’t you had times in your life when you were extremely good and other times when you were not nice, maybe even terrible?

If we can have the awareness that in life, sometimes we are up and other times we are down. And that life is like a wave of not just our emotions, but also based on our experiences in this world. Perhaps we would be less inclined to point the finger at others. Why must we judge so harshly, particularly when change is constant within all of us?

I love this quote “Cultivating a close, warmhearted feeling for others automatically puts the mind at ease“. Dali Lama

So true, it takes energy to be angry, to repeat your stories and think negatively. While it gives us energy to care for others and to be grateful for what we have.

You and I are in control of our emotions in any given situation. Why not choose loving over judging?

The pain I felt waking up from surgery forced me into a state of feeling the present moment. In this space of not looking forward nor behind is where I eventually found my souls true joy.

After donating my kidney I felt as though I had a clean slate. I was acutely aware that I had let go of baggage particularly around feeling worthy in the world I inhibited. My problems didn’t go away, but my sense of self changed immensely. I felt happy, lighter and open to life’s challenges. I had been putting emotions and life’s chores on the back burner far too long.

Over the next year I found a sense of joy that reached me to the core. No longer did negative events in my life shut me down. Instead life flowed easily throughout my days. Not naming things bad or good, I stopped telling my story and just appreciated. I can remember my Father saying, ” life is not easy, it’s hard”. And now, I find life for the first time easy.

And then..

As we all know change is imminent. We cannot nor should we stand still. Nothing stays the same, particularly if you are like me who gets energized by growth.

As I enter this next chapter, I find myself challenged. In a new city where home is a hotel room and doing interesting work with new challenges to open my mind. In life, it can be both bitter and sweet. I get energy from learning, growing and being around people who are intelligent, kind and passionate. However, the slightly bitter side is selling my home, leaving my friends and family who are so far away and of course the unknown.

A change of self can sneak up quickly, particularly when we are in the fast lane. It’s here that I find myself feeling weathered, alone and emotionally drained. I then look for what is wrong and complain to myself, “I miss, I wish, I want” and it’s then that I realize I am heading in the wrong direction. These thoughts do not empower me, they in fact drain me.

I quickly re-connect and that does the trick. I simply turn my complaints into what I appreciate. These opportunities to grow, to love and to be challenged and to trust that I am exactly where I choose to be.

I reflect and realize its simply my attitude that has changed and I find the joy in each moment flowing through my veins and I am happy once again.

Donating a kidney has been a catalyst to finding joy in my life. Part of this journey was staying at the family home just two days after donation.

At the family house I connected with a dozen or more families who had a loved one in need or were receiving an organ. My own situation seemed trivial at the time. The worries that kept me up at night suddenly felt wasteful. I found myself feeling present and seeing the world entirely different.

I love this excerpt from David Whyte’s poem “Giving”. “To give is to make our own identities more real in the world by committing to something specific in the other person and something tangible that could represent that quality. To give is also to carry out the difficult task of putting something of our own essence in what we have given”.

Giving takes practice and commitment in seeing the other person. Isn’t that what we all want? To be seen? Some of the stories I hear from friends this holiday season are about simple moments of giving. Someone that cares and takes the time to listen with humility, or small acts of kindness from strangers.

Home for the Holidays

On this Christmas Day I find myself grateful for having my grown children under the same roof, the health of my family and friends and the love that we share. The blanket of snow that covers the ground and the sun that pours in through the window makes a beautiful day.

My wish for everyone today is to take a moment and appreciate the gifts in your life.

It’s Thanksgiving Day and I can remember the anticipation of my family getting together for the holidays! It seems like so long go… when I was a child with five other siblings, my Mom would rush home from work and we would go to the grocery store on the money my parents earned that week. She would buy all this wonderful food that we didn’t ordinarily have in the house for a very special dinner.

Cooking a big dinner was a lot of work and yet it was a simpler time. We were all happy in anticipation of the meal. Plus, for us kids it meant Christmas would be here soon. Our home was always noisy with lots of running around, a few fights between us kids and always a sentimental word at the table. As we grew older our family expanded and we continued to get together for holidays.

But now we are literally spread around the world. With my youngest son in Japan, my oldest son and his fiance in Los Angles, and my siblings and their families living in various places across the country.

Even though so much has changed, including the loss of my Dad in August there is much to be grateful for. I have learned particularly in the past few years that being joyful– is based on focusing on what I have and what is going well versus the opposite.

I was always adamant with my kids as they were growing up saying “We don’t get to choose what comes at us, but we do get to control how we respond in any situation”. For me, I have been tested many times throughout my life and I haven’t always done well. My ah ha moment came when I was 24 years old when my first son passed away. I was devastated! I remember Father Dunn at the burial service telling me that I was at choice in how this would affect my life. Those words empowered me, they continue to empower me.

I was reading a post tonight about a young women asking for a kidney for Christmas. Many of us ask for a piece of jewelry or perhaps the latest gadget. Yet so many others wait for a phone call that will change their life….. we found a kidney and its a match!

Did you know that one in 10 American adults, more than 20 million, have some level of CKD? Source: Centers for Disease Control and Prevention. In addition, a recent article in the Wall Street Journal said Doctors often don’t test for kidney disease, and patients may have no symptoms until they are in crisis. Yet kidney disease is fast becoming a dangerous health threat, and one of the most costly. The most common test screens urine for an excess amount of a protein called albumin, often the first sign of kidney damage.

Every week on various forums I see people sharing their stories of giving to another and it’s really beautiful.

Still 13 people die each day while waiting for a life-saving transplant, nearly 3,000 new patients are added to the kidney waiting list each month. National Kidney Foundation

How can you help?

1. Get educated

Marketing yourself in a social world.

2. Find someone to advocate on your or friends behalf

3. Be aware that you can register on more than one Kidney Paired Donation (KPD) program.

4. Download our white paper….We took the concept of “finding a donor” in today’s social world and created a plan! Some of our content includes; creating a strategy, how to write a press release, ideas for raising awareness, the role of an advocate, developing your message, and so much more. Please take a moment to sign up and download this free paper and share your feedback. A special thank you to my friends, all marketing gurus!

Gini Keck who painstakingly proofed this paper over and over again,

Rebecca Johnson Menedez who contributed “how to get your message to the press”. Writing a press release.

Mary Beth Lowery for your well thought out suggestions.

Shelly Dinan for all your contributions in writing and consult!

Mike Sukhenko for your amazing design and layout

How about a challenge? As the holidays quickly approach, I challenge you to do one small thing every day for another human being? Share your stories and spread the word!

Wendy

As the poet David Whyte wrote “Courage is the measure of our heartfelt participation with life, with another, with a community, a work, a future. To be courageous, is not necessarily to go anywhere or do anything except to make conscious those things we already feel deeply and then to live through the unending vulnerabilities of those consequences”.

About Wendy – A kidney donor myself a little over a year ago I continue to feel gratitude. Although I was not a match for my brother, I was still able to give through the kidney paired exchange program. Obviously this was a huge benefit to my brother and he is doing well, However, I did not expect the gift I would receive in return! read more

I recently ran a survey for kidney donors through a large private support site and we had an excellent response! One of our responders said, “Donating a kidney was a defining moment in my life. It showed me the capacity to love and care for someone else. Realizing you’re making a decision that is beyond yourself is a very humbling experience and I wouldn’t have changed any part of the journey for anything”. Cody, Santa Rosa, CA, 22 at the time of surgery in 2007

The news was pretty much what I expected or in fact reflected my own experience. Interestingly a majority of respondents said that they would donate again! Frankly this wasn’t even one of my questions, these responses were left in the open comments box.

We asked donors what amount of time did it take to become approved as an organ donor? Our responders who are from various parts of the United States answer’s varied. From up to a year, to as little as 2 months. Our average response was 5 months before they received approval to donate their kidney.

As you can see by the chart below most of our donors 78.79% are direct donations and gave to a family member, a friend, or a co-worker. The good Samaritan donation is someone who chooses to donate to someone they had never met before!

I was surprised to see only a few people were paired exchange donations. Kidney paired donation is an option for living donor pairs who are not compatible with each other. For example, I was not a match for my brother Tim, however through a paired exchange program I was able to become part of a swap with eight other donor/recipients. Therefore my kidney went to NYC and my brother’s kidney came from Philadelphia. etc. Within 24 hours of being added to the National Kidney Registry (NKR) they found a match for my brother.Studies show that a donor will take a risk to help another in a moments notice; they often think only about giving life to another, particularly when a loved one is involved.

I asked an open-ended question on the survey “Did donating your organ have any affect on how you view life today”? Some of the responses were…

“It made me again realize how important each of us are on this earth, for whatever reason, little or big, we are here to serve and love one another and help one another on this journey”. Julie, 47 at the time of donation, Imperial Beach

“When I first learned about altruistic donation, I thought it was incredibly cool that there were people in the world who would do that. Now I get to be one”. Carol, 59 at the time of donation.

“I’d do it again. I firmly believe living donors and pairings are the only way to reduce the kidney waiting list”. Kara, 54 at the time of donation, Chicago

“It made me realize how good it feels to give. I became more active in volunteer work following my donation”. Michelle, 25 at the time of donation, Rochester, NY

“Yes – don’t waste time striving for happiness, positive outlooks, and making others feel happy”. David, 27 at the time of donation, Boston

“I’ve always lived life the same….but this was probably the most amazing thing I have done. I’d do it again….in a heart beat”. Tara, 34 at time of donation, Bakersfield, CA

When you consider what the surgery entails along with some risks for the donor, these responses and so many others received are remarkable, but not surprising.

Most patients undergo laparoscopic surgery for kidney donation and require a hospital stay of only two to three days. For me, I was 52 when I donated and am now back to doing the same active things I did before my surgery! Including plans for a 100 mile bike ride in the Spring.

Another interesting comment that seems to be common thread is; donor’s do not like to be perceived as heroes. They simply took a step to help another and of course wouldn’t you do the same? Would you? We would love to hear from you? What are your thoughts on organ donation? Take our survey!

About: The first Kidney donation was done in 1954. There are some risks for the donor and you must be healthy. Most patients undergo laparoscopic surgery for kidney donation and require a hospital stay of only two to three days. For me, I was 52 when I donated and am now back to doing the same active things I did before my surgery! Over 50,000 living donors who have donated their kidneys to people facing kidney failure.

At the age of 28 Amanda was receiving her workup for transplant and was asked how she was able to maintain her attitude throughout her 13-year battle with Kidney Disease. Amanda answered, “It’s simple. I don’t get too anxious or worried. I take a moment to acknowledge it and move on. I take after my Dad.”

It was a hectic morning as I raced across Pittsburgh to pick up my brother for our six month post transplant check up. It was cold outside and I was dying for a cup of coffee. As we hurriedly entered the hospital, I scoured the waiting room looking for familiar faces. I looked forward to seeing the doctors and nurses with whom I had shared one of the most profoundly impactful times of my life.

My brother was called into his appointment as I sat in the transplant waiting room on a comfortable chair with coffee in hand, I noticed a young women holding a large box of medications in her hands. She had long, dark hair and a smile that reached her eyes. I was immediately curious about her. I knew she had received a kidney by the medications she carried. Everything else about her looked happy and healthy.

Here’s her story…

I was shocked to learn that Amanda had received a transplanted kidney only two weeks prior! She had a bright, sunny disposition and I could clearly see she had a wonderful outlook on life. As we started to talk, she immediately mentioned her seven-year-old son who was obviously a light in her life.

Amanda shared her experience and how she got to this place with me. Her symptoms started at the age of 15 when one morning she woke up with pain that ran from her right lower back to her side. She tried, but could not walk. By evening she had a fever and was vomiting. When her Mom took her to the pediatrician the next day, she was diagnosed with the flu. Amanda’s Mom pushed for more tests and it wasn’t long before they realize her creatinine levels were off. Normal levels of creatinine in the blood are approximately 0.6 to 1.2 milligrams and Amanda’s were much higher.

Amanda began a regimen of going to the children’s hospital every three months for evaluation. It wasn’t until her 22nd birthday that the pain flared up again. She ignored the pain, thinking it would go away until a horrible dream of death one night caused Amanda to face the reality that she needed to have this problem checked out. Her creatinine levels were at 1.9.

And… two months later Amanda and her husband discovered that she was pregnant! Due to her precarious health, her pregnancy was deemed “high risk” and Amanda was monitored closely. The good news is that she carried her baby to full term and she and her husband welcomed their beautiful and healthy son to the family?)

A year-and-half later, Amanda’s condition deteriorated to the point that she had to start dialysis. She was transported by ambulance to the main dialysis center in Pittsburgh. A port was put into her jugular and she started dialysis that day in the hospital. Her attitude remained upbeat and she was put on the list to find a donor. Her immediate family and friends were tested and were either not a match or unable due to health reasons.

During the first year of dialysis she found a center nearby and was able to maintain her job along with her dialysis appointments. Not surprisingly, Amanda found she was the youngest person there, every other day she would go to the clinic and see the same nurses and patients. She would lie there for four hours at a time while they emptied out her blood, cleaned it and put it back in her body. This was an exhausting process, particularly with a young child at home.

During this time Amanda had at least six replacement catheters in her chest (catheter is placed by puncturing the internal jugular vein in the neck) and the catheter is then advanced downwards toward the chest). A catheter is used for exchanging blood to and from the hemodialysis machine from the patient. Most patients would have one added in the arm. However, Amanda’s never matured enough to use it.

Amanda eventually had the opportunity to do home dialysis Peritoneal dialysis (PD), which she did for two years before receiving her transplant. Home dialysis gave her the flexibility to do it at night for eight hours while she slept and she didn’t have the exhaustion.

At times she felt it would never end. But after three years on dialysis her Aunt flew to Pittsburgh to donate her kidney directly to Amanda.

Amanda is so proud and grateful of her Dad’s sister who after surgery is doing a 100% better. At 55 years of age she is retired and living in California and watches her three grandchildren while her own daughter and son-in-law are stationed overseas in the US Air Force.

Studies show that a kidney from a living donor can last up to 20 plus years. Amanda is taking good care of herself. She is healthy and recently got a membership to a health club. She is focused on eating well, exercise and taking her medications as directed. And, I can’t help but think that her positive outlook on life makes a huge difference in her overall success.

Amanda’s hope is to have more children, and she happily tells me that she will be talking about just that when she meets with her doctors in January, which will be her first anniversary with her new kidney.

Sharing Our Experiences, Creating Awareness

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